Dear Josephine,

Yesterday your father shared the news that your wonderful mom, Samantha, passed in her sleep early Christmas morning. Though we knew your mom had been battling cancer for a long time with incredible bravery, we still can’t believe we won’t see her again and our hearts are broken. We know our grief and shock are nothing compared to the loss you and your dad are facing. 

Over the next days, months, and years many of those who knew and loved your mom will share stories about her so you may know her better through their memories. They will tell you about her childhood, college escapades, and days as a daring derby girl. They will reflect on her love for your dad, her joy in motherhood, her professionalism at work, her commitment to social justice. 

Those of us who knew your mom through her advocacy with Little Lobbyists have been sharing our memories with one another, paying tribute to the wonderful person she was. We’d like to honor your mom’s memory by telling you how much we loved her and how – because of her love for you – she worked to change our country for the better. 

Your mom met up with us in 2017 when the political party in power was trying to destroy our country’s health care protections, threatening our kids with complex medical needs and disabilities access to the care they needed to survive and thrive at home instead of living in a medical facility or institution. (We hope by the time you read this letter that idea sounds absurd, and that our country finally guarantees health care as the right your mom and all the Little Lobbyists believe it is.) That summer, a small group of families – your mom and dad included – knew it was up to us to protect all our children.  We showed up on Capitol Hill to tell our stories. A reporter who wrote about our families gave us the name “Little Lobbyists” in honor of kids like you.

To paraphrase our co-founder Elena (who befriended your mom a year earlier in the local trach group), your mom knew there wasn’t a thing she’d change about you, but there were countless things she would change about our country for it to become the place you need to thrive. She took you with her to Capitol Hill, so members of Congress could meet you and see whose life was at stake in the votes they took. She wanted legislators to understand that a better future is possible for ALL of us with the right policies. 

Your mom’s warmth opened the door, and her determination got you both through it. She made sure you met future and past presidential candidates, including our first female Black and Asian Vice President, so you’d be represented by those in power. She gave powerful speeches in the Capitol and countless interviews to reporters, telling your family’s story over and over again. 

She never, ever gave up. 

Everyone who met your mom loved her. She radiated warmth and kindness and could make the most nervous and new-to-advocacy feel like they belonged. Even in serious situations, she brought joy with her — dressing you up in the most adorable tiny pink Doc Martens, trick-or-treating in the Senate, celebrating victories small and large. She kept in touch. She always showed up. 

Little by little, you and your mom and all our Little Lobbyists families changed hearts and minds. We saved our health care protections and are working to create the change our country needs to be worthy of you as you grow. Our deepest sorrow is knowing you will grow up without your mom beside you, where she most wanted to be.

As you face the challenges and triumphs in your future, know that our Little Lobbyists family will always be here for you. Most of all, know how much of your mom is part of you. 

Your smile has your mom’s open, gracious warmth. Your deep brown eyes have her joyful, mischievous sparkle – always ready to get into “good trouble.” Most of all, you have her determination. Your mom frequently beamed with pride when sharing your determination to reach each new milestone – eating, walking, climbing – and we all knew your spirit came from her. 

Dear Josephine – stay determined. Stay open and warm, joyful, a little mischievous, and always ready for good trouble. We promise we will keep showing up for you and all our families – in honor of your mother’s indomitable spirit – to create a country worthy of us all.

All our love, always, 

Your Little Lobbyists family 

---

“The minute I met her I felt like we’d been friends forever. She was a bright and fierce force of nature. So much so that when you came within 50 feet of her she had her own gravity that pulled you in. She was a badass, an amazing friend and a person who always told it like it is.” - Tasha

“Sam was an amazing friend and mom. You could always depend on her, and we could talk for hours. She used to tell me so many stories about Jo, and man, she loved that kid. Sam was love and fire and determination- an incredible person.” - Caroline

“Sam was one of the first moms to welcome me into the Little Lobbyists crew. I remember sitting with her at an event and asking her a million questions about her home health nurses. She’s a big part of the reason I’m about to start back to work as a pediatric home health nurse.” -Alison

“Sam was so fun, and so kind. I’ll never forget how she drove over an hour to come to my daughter’s skateland fundraiser for Lymphoma. She showed up with a huge smile and an even bigger hug. She was wearing her derby girl best and had attached rainbow lights to Jo’s wheelchair. It was pure joy to watch her fly around the rink.” - Laura

“I was immediately impressed with Sam's sense of humor and her dedication to saving health care. No matter what, Sam was up for advocacy, even as she and Jo each dealt with their medical needs. I wish I'd had longer with her.” - Jeneva

“Sam was my favorite kind of person from the moment we met: equal parts kind and badass, thoughtful and spontaneous, funny and serious. She was a bold leader who knew she was part of something much bigger than herself, always making others feel welcomed. Truly one of a kind. We bonded over our feisty daughters (often joking about how they were the boss of us) and we never forgot what was truly important.” - Elena

Becca today. [image description: A young woman with light skin and shoulder-length red-brown hair poses on a porch. She wears a blue denim jacket over a bright red shirt. She wears thick-frame black eyeglasses.]

My daughter Becca is thirty-two years old. She volunteers at a stable where she’s been riding horses since she was eight years old. She’s training her golden retriever puppy, Lexie, as her service dog, and she’s helping her brother learn tools to assist with his low vision, a condition she shares. 

Becca has complex medical needs and disabilities, but thanks to the support of Medicaid Home and Community-Based Services (HCBS), Becca is able to direct her own care and decide where she wants to live. She’s hired her own employees through supported decision making. Becca would never have survived a nursing home outbreak of Covid-19. She has become a strong advocate for herself and for others who should have the chance to live in their communities. 

We have come a long way in developing care systems for our most medically complex and disabled children and adults. But it wasn’t always that way. Even now, many have not had the opportunities that help Becca. Too many are still on years-long waiting lists for HCBS.

When Becca was born in 1989 she spent the first six months of her life in the neonatal intensive care unit (NICU). We later learned that she has Noonan Syndrome, a genetic disorder affecting the heart, skeleton, and other other systems. Becca has heart, airway, lung, gastrointestinal, lymph, and immune system issues. At two-and-a-half months old, she experienced her first code blue.  

We quickly learned that the hospital was the worst place for an immune-compromised child. Fortunately, Becca’s medical team helped us apply for one of just 200 Community Alternative Care (CAC) waiver slots in Minnesota, and she was one of the first babies out of the children’s hospital to have an Individual Family Service Plan (IFSP). She was supported at home with caregivers, therapies, and nursing.  

Later, after our private insurance denied Becca care due to preexisting conditions (this was before the protections of the Affordable Care Act), and our family had fallen into poverty to cover her catastrophic medical bills, Becca became eligible for Social Security (SSI) and was finally able to obtain a Medicaid waiver to provide for her long-term care needs.

Thanks to Medicaid waivers for Home and Community-Based Services, we found our new normal and I was able to meet Becca’s needs and also care for my other five children. Medicaid even helped Becca go to the same school as her siblings! She was the first medically complex, technology-dependent child to be included at the local elementary school. 

The Yurcek Family several years ago. [image description: A father poses in the center of the frame, surrounded by six children of various ages and his wife. The family is light-skinned, with brown hair of various shades and styles. There are five people who present as female, and three who present as male. The father, who is a physician, wears a white lab coat and has a stethoscope slung around his neck. Everyone is smiling broadly.]

The Medicaid waivers that allowed Becca to live at home with our family helped her not merely survive, but thrive! The same waivers allowed our family to survive as well. We dug ourselves out of poverty when my husband returned to school. He was able to become a General Surgeon because we had home nursing support for Becca.  

My husband and I were also able to pay the support Becca received forward by adopting six foster care siblings with complex trauma and fetal alcohol spectrum disabilities and our medically fragile foster care child Mac.  As my husband and I age, we are counting on Medicaid HCBS waivers to help our children continue living in their community as adults. 

We have experienced the best of Medicaid waivers, but so many of the families I have helped and advocated for are not as fortunate as we have been. These families need home health care workers, and their disabled loved ones have a right to get the care they need in their homes and communities. Family caregivers need to be valued and supported. For family caregivers, fighting red tape for services is exhausting. Because of a lack of funding and low pay, it is difficult to find and hire direct care workers. 

Right now, the Build Back Better Act that is waiting for a vote in Congress includes an historic investment in care that would expand Medicaid’s Home and Community-Based Services. If passed, this funding would get hundreds of thousands of people with disabilities like Becca off of waiting lists for care; it would create thousands of good paying care jobs; and it would allow over a million unpaid family caregivers to return to work or school knowing that their loved ones are getting the care they need at home. Please contact your representatives. Ask them to pass the Build Back Better Act, because for families like mine care can’t wait any longer.

---

Ann Yurcek is a mom and an advocate who has written to and met with legislators to push for much-needed lifelines for disabled children and adults with families like hers. In 2000, she attended the Washington, DC launch of the Medical Home Conference. As the Affordable Care Act was being planned, Ann was asked to write a piece for Health Affairs, “Against All Odds, How A Medicaid Waiver Brought Our Critically Ill Daughter Home,” and “Tiny Titan, Journey of Hope,” her family's story.

Daniel (center) with his sister Melody (left) and his mother Carolyn (right) at Melody’s wedding. [image description: A wedding photo depicting a bride with light skin and long, curly blonde hair wearing a white lace gown and veil stands at the left of a young man seated in his wheelchair. The young man has light skin, short dark hair, and has glasses. He wears a navy blue bow tie and white dress shirt. To the right stands his mother, a woman with light skin and dark brown hair in an up-do, who wears a navy blue, off-the-shoulder gown. She also wears glasses and a wrist corsage of white roses. The party is posed under a trellis arch of white roses and green leaves, with the ocean in the background.]

In the spring of 2010, I headed to the zoo for my son Daniel’s annual school field trip. I loved spending the day with other parents of children with disabilities. The comradery fed my soul. This was the last trip of his elementary school years in our home state of Florida.

Daniel is now a 22-year-old man. He’s a happy guy who loves to drum, swim, and listen to music. He was born in 1998 with a rare genetic disability that affects him physically and intellectually. It wasn’t officially diagnosed until he was 21 years old, thanks to the increased availability of genetic testing. A random deletion on one of Daniel’s calcium channel genes results in a severe seizure disorder and global developmental delay. 

After cruising past the giraffes and elephants, we took a break for lunch. Wheelchairs rolled in, some with IV poles attached for midday g-tube feedings. Pureed lunches were pulled from backpacks for those able to eat by mouth. I could relax knowing there were others who understand my struggles as well as my deep love for my son. Among them was the unfamiliar face of a mother and child new to our school. 

The new mom had recently moved to Florida from Wisconsin. My first suggestion, as it often is, was to contact the Agency for Persons with Disabilities to enroll in the Home and Community-Based Services (HCBS) Medicaid waiver program. Daniel had been on the waitlist for eight years, one of 20,000 Floridians waiting for services that provide respite, personal care assistance, and help with the extra costs of raising a child with disabilities or caring for an elderly relative. Today, there are 72,000 Floridians on HCBS waiting lists. 

“Oh, we’re already on the waiver,” the transplanted Floridian explained. 

“What? Daniel was born here, and we’ve been on the waitlist for years. I have written so many letters to my representatives, helped with state-wide petitions, and made more calls than I can count. HOW did you get on the waiver already?” 

She looked a little embarrassed. I have her to thank for opening my eyes, though.

“Well, my ex-husband has back problems. Not severe, but bad enough that we were able to get crisis services when we documented his chronic pain,” she told me.

I suffer from back pain due to repetitive lifting of Daniel. My back problems were compounded by a car accident. It turns out that a caregiver’s chronic pain moves a child’s status higher on the waiting list in Florida. So, I filed the appropriate paperwork. Several months later, we had some help.

Why do people with disabilities  and their parents have to jump through so many hoops to access the funds that keep them at home and in the community where they thrive? The answer is chronic underfunding, which is why the Better Care Better Jobs Act (BCBJA) is so important. The BCBJA would eliminate state waitlists, increase pay for home care workers, and create good jobs with appropriate training in home health care. In Florida alone, 5,000 new jobs would be created. In addition, 10,100 family caregivers in Florida would be able to return to work themselves. 

Once enrolled in Florida’s HCBS system, we could hire personal care attendants to dress and feed Daniel in the morning and get him on his school bus, so that I could be at my job on time. The downside was significant turnover at the agency I used, and his care was not consistent or high quality. I cringe when I remember travelling out of state to be with my mother as she was dying, and Daniel’s assistant left him unattended, resulting in a fall and the loss of a permanent front tooth. 

Low pay for home care workers meant I couldn’t always rest easily when Daniel was in their care. In Florida, there’s a consumer-directed option (also known as “self-directed” services) that allows me to hire friends, family, or my own hand-picked assistants. After Daniel’s fall and injury, I moved us into that option. 

Florida has a base pay rate of $12 an hour for home health care workers, which is not a living wage. I am able to increase it as our budget allows, but a few dollars more is not enough incentive for the type of caregiver Daniel needs. Plus, increasing hourly pay reduces the number of total hours available to us. As a result, home health care work is not sustainable for those who need employee benefits such as health care and paid time off, a huge barrier to assembling a quality team. I have been lucky to find a few fine people who take good care of my son, but they are the exception, not the rule.  

The HCBS programs, nationwide, are in need of crucial improvement. I am pained that so many in my community are still waiting to be added to this critical waiver, or, like me, are having difficulty finding care providers they can trust. There is an urgent need for the Better Care Better Jobs Act to be passed to create jobs, raise wages for direct care workers, and eliminate HCBS waiting lists. 

---

Carolyn Murray is a retired registered nurse currently caring full-time for her son Daniel, who has complex medical needs and disabilities. She is also a writer for professional nursing journals and other publications. Carolyn works closely with her former husband, Tom Murray, to provide a meaningful life for Daniel. Her daughter Melody and son-in-law Andrew live nearby in Jacksonville, Florida.

Rob Stone and his parents at a Care Coalition rally on the National Mall. [image description: A young man with light skin is seated in a wheelchair. He wears sunglasses and a surgical mask over his tracheostomy; he wears a “Caregiving Is Infrastructure” t-shirt. His parents, light-skinned persons each wearing “Caregiving Is Infrastructure” t-shirts, stand behind me. Behind the group is a large teal fabric sign that says, “#CareCantWait / Time to Deliver / Jobs. / Home Care. / Justice.” The family is standing on a grassy area of the National Mall, near a large reflecting pool in front of the U.S. Capitol Building.]

In 1981, President Ronald Reagan learned about a 3-year-old girl with complex medical needs and disabilities named Katie, who was forced to live in an institution because federal rules governing Medicaid prevented her from getting the care she needed at home. President Reagan knew this was wrong, so he created the Medicaid waiver program, allowing states to "waive" Medicaid's institutional bias for people with disabilities, like Katie, who wanted to get the care they needed in their own homes and communities. 

This right to what we now call Home and Community-Based Services (HCBS) was later affirmed by the U.S. Supreme Court's Olmstead decision in 1999. But, 40 years after President Reagan brought Katie home to her parents, and 22 years after the Supreme Court declared that segregating people with disabilities in institutions violated civil rights, Medicaid rules are still forcing people to live in institutions in order to get the care they need to survive. 

Why is it so hard for Congress to allow people with disabilities the freedom to live in their own homes and communities? Medicaid has been a life-saving program, but it has one major flaw that disability activists have been trying to correct for decades: Medicaid’s “institutional bias.” 

When I originally sought Medicaid services for my disabled son Rob in the early 2000s, I just assumed that my son could be cared for at home. I mean, that’s where people belong, right? I didn’t understand what requirements were “waived” by the HCBS programs. Medicaid generally serves people, disabled and nondisabled, with incomes that are close to or below the federal poverty threshold. Was it that Rob was a dependent disabled child that made him eligible? Was it our income, which was well above the federal poverty level, that was being waived? I knew that Rob, himself, could only have $2,000 or less in assets at any time in order to qualify. 

All of the above is part of what qualifies people for Home and Community-Based Services programs. But none of these are the main restriction that’s being “waived.” 

Medicaid is run jointly by the states and the federal government. It was created in 1965 in order to ensure that people living in poverty, and those whose disabilities required 24/7 or nursing-level services, were guaranteed care. 

But, Medicaid only entitles disabled and elderly people to receive care if they are in an institution, nursing home, or other licensed Medicaid facility. According to federal law, there are to be no waiting lists for institutional care.

And that’s Medicaid’s institutional bias. That’s what’s being waived in Home and Community-Based Service programs, the requirement that you live in an institutional setting to receive the care you need to survive. 

It wasn’t until 1981--when Katie Beckett’s parents found out they couldn’t bring their disabled daughter home from the hospital--that the system finally began to change. In 1983, Congress finally allowed states to “waive” Medicaid’s institutional care restrictions and, for dependent children with disabilities, family income could also be waived. This new home care system was given the name “Home and Community-Based Services.” 

But Congress has never fully funded the home care system, preventing thousands who need HCBS from accessing care. Forty years later, it’s still the case that NO American is entitled to receive care in their own homes through Medicaid, and the government will only guarantee care in an institutional setting. Forty years later, we have over 800,000 people on waiting lists for home care because states can limit HCBS waivers and the vast majority of Americans with disabilities, and a rapidly growing number of seniors, do NOT want to receive care in an institution. 

That’s why all of us with lives at stake need to keep pushing to FINALLY get full funding for HCBS. 

If Congress passes the Better Care Better Jobs Act, we could clear out those waiting lists. Everyone who needs it could finally receive home care. More than that--home care workers could finally be paid what they deserve. Too many of them earn less than a living wage. Did you know that the average health care worker in this country makes only $12 per hour?

Home health care workers are entrusted with people’s lives. Their work is complex, and it requires skilled training. These workers deserve more respect, better wages, and benefits. We can’t ask them to sacrifice their own families’ needs for their jobs. The Better Care Better Jobs Act would create 500,000 new health care jobs, with better wages, wages people are willing to work for.

Under the Better Care Better Jobs Act, States would have the funding to establish training programs for home care workers, ensuring that we have a stable workforce for our community going forward. A September 2021 analysis by Moody’s Analytics also shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs.

Contact your federal representatives today! Together, we can knock down the wall of Medicaid’s institutional bias forever! 

---

Jeneva Stone is the blog manager for Little Lobbyists, and she also volunteers her time with several other disability and health care organizations. She is also a writer. Her son Rob is a disability rights and health care advocate, as well as an artist.

Myka holding her vaccine card. [image description: A light-skinned girl with shoulder-length blond hair holds up her vaccination card. She is standing outside a chain drug store, with signs on its windows. She wears a striped t-shirt and denim shorts.]

September 24th felt like an eternity away. September 24th was my daughter Myka’s 12th birthday. We began counting down to her big day the minute the CDC, last May, approved Covid-19 vaccines for kids 12 and up. Myka, the youngest of my three kids, is the only unvaccinated person in our family of five. Although she went back to school full-time, in-person while masked up, we knew that every day she left our home, she would be exposed to many elements but none as worrisome as Covid-19. 

Myka was born with an undiagnosed congenital heart defect, and we were told by her team of doctors to vaccinate as soon as we were able. All three kids are very active--Myka has been involved in Girl Scouts, ice skating, aerial and now volleyball for many years--so we knew being careful, masking up, and vaccinating our entire family would be the best way to protect Myka until she herself was able to receive hers. 

It wasn’t easy to wait. We walked a fine line of allowing our kids the opportunity to be kids and maintain their active lifestyles of playing sports and competing, attending school and school functions, and seeing their friends. We knew we took a risk each time they left the house. In the beginning, we felt all those around us in our community were on the same page until they weren’t. Our schools required masks to begin the new school year but this was not received well and many local and vocal parents combatted this at school board meetings each month. It left us feeling extremely vulnerable and alone.

We kept Myka as well protected as we knew how. Many times we had to say no to a Girl Scout outing or a friend activity, devastating our daughter in the meantime, but knowing it was in her best interests. We simply wanted to get to her 12th birthday.

The morning of Myka’s birthday, I logged on to finally schedule a vaccination appointment for her. I would waste no time. As I drove my older boys to school, tears began to well up. My very wise 14-year-old son noticed my emotions and said, “You’re crying tears of relief aren’t you?” Yes. Yes, I was. The overwhelming weight of worry had been removed from my shoulders. Although she would not be fully protected for another 6 weeks, I knew having that first injection would make all the difference in our family’s fight to keep her safe. 

As we hear word that vaccines may be approved for 5 – 12 year olds very soon, I beg parents to hold on just a little bit more. We’ve all held on for so long, waiting and hoping for our children to be protected from Covid. We’ve endured challenges to our children’s schooling, friendships, and activities. We’ve surfed the mask wars in our communities. Hope is on the horizon.

The debilitating worry can be overpowering at times. Understand this, you are not alone. 

---

Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists.

Dear Senator Sinema,

16-year-old Taryn and her mom and dad embrace.

My daughter, Taryn, is 16. She loves to go camping, she loves her family, and she gives great hugs. She was also born with very complex medical needs, as well as cognitive and physical disabilities. You may remember meeting Taryn and me last March when we had the opportunity to speak during a constituent call over Zoom. In that conversation, I explained how I navigated each day with gratitude for the blessing of my daughter, and with worry about managing all the care she needs to ensure she has a fulfilling life. I shared that my husband and I worked tirelessly together to create a safe and happy home, and provided full-time care for Taryn. While we were able to get some in-home services through Arizona’s Home and Community-Based Services programs (HCBS), there is a shortage of home-care providers. Many families will tell you the same. 

Taryn and her father

A lot has changed for my family since we spoke. My fears have been drastically compounded by the unexpected passing of my husband, Taryn’s father, in late August. I’m suddenly faced with being a single parent. We’ve lost our family’s main financial provider and his job benefits, and now I have to figure out what life will look like for Taryn and myself going forward. Without my partner, I know I will need to rely on Home and Community-Based Services more than ever, yet I also know the care workforce is in a state of crisis, made worse by the COVID-19 pandemic. Without full funding for the Better Care Better Jobs Act in the Build Back Better reconciliation bill, Taryn and I, along with thousands of families like ours, will be left behind to try to endure without access to critical life-saving care. 

When we met with you last March, you assured us that you knew good policy for HCBS was important. You said that we could count on you, and I believed you. But now, without any explanation, you are withholding support for the very policies my family needs. I struggle to understand what part of this policy you have an issue with, because when I look at the financial analysis, it makes good fiscal sense over the next 10 years. The Better Care Better Jobs Act and the Build Back Better agenda will create jobs and allow those with disabilities and the elderly to get the care they need in their own homes and communities (which costs significantly less than institutional care). President Biden’s caregiving infrastructure plan will also allow caregivers to return to work, and it will contribute to the next generation of workforce development.  

Dawn and Taryn in a zoom meeting with Senator Sinema, members of Little Lobbyists, and her staff.

I know there is no such thing as a perfect policy, but your responsibility is to create and pass policies that improve lives in Arizona. As do many Arizonans, I believe the Build Back Better plan does just that. To remind you, roughly 65% of Arizona voters support the 3.5 trillion Build Back Better plan, with over 80% of your constituents supporting investment in Long Term Care. Continuing to stall threatens the lives of Arizonans with disabilities and Arizona’s elderly; that’s cruel and unacceptable. I urge you to consider who you are harming by not supporting this plan and remember that you represent Arizona voters first.  

As I have said before, I am available to talk with you anytime about the effects of policy on my family’s day-to-day life. Finally, I leave you with the words my daughter carefully programmed into her communication device last March to share with you. Taryn told you, “Your work is important.” Please remember that, and vote for the support our families need.

Your constituent,

Dawn Bailey
Registered Voter,
Chandler, AZ

Kim’s sons Elijah (l) and Isaac (r). [image description: Two young boys with light skin stand closely together with their arms around each other. One wears a blue plaid shirt, the other a yellow t-shirt with the words “Wakanda Forever” and an image of Marvel Comics’ Black Panther.]

My son’s night nurse just told me she’s leaving home health care. Through tears. She cried as she told me how much she loves us all and how hard she tried to make this work. She cried as she told me that the health insurance she is offered doesn’t cover her or her daughter’s monthly medications, and she just can’t go on without making ends meet. 

Isaac’s nurse began working with him two years ago, stepping in to become his regular day nurse, which helped him attend school – which he often missed. When his needs changed and we needed a night nurse, she quickly shifted gears to fill that spot. In Virginia, where I live, the median wage for home health care workers is $10 per hour. That’s right, $10 per hour. Nationwide, the median wage is $12 per hour. A living wage is at least $15 per hour. 

Isaac’s nurse cried as she promised to stay on as long as it takes to train someone new to do her job because she is so upset with herself for leaving us like this, even though it’s her family that’s been paying the price. 

My son Isaac is a hilarious, somewhat mischievous twelve year old. He loves all things Marvel and Mario Kart. He can’t wait to get home from school each day to get outside and play with his friends. Building forts in the woods is one of his favorite things to do.

Isaac had a tracheotomy to help him breathe until June of this year. He still has an open hole in his neck where the tracheotomy was. He also has a feeding tube that delivers nutrition directly to his intestines at night. He requires overnight care as his airway is still being assessed, and his tube feeding requires supervision. Without nighttime care he could dislodge his feeding tube, and it can only be replaced during a hospital stay. 

I am exhausted. Beyond exhausted, if that’s possible. I am so tired of working full-time to be the only financial support for my two boys, while juggling their needs, Isaac’s medical needs, and FIGHTING my government for BASIC needs. 

For my family, the home health care nurses funded by Medicaid’s Home and Community-Based Services (HCBS) are basic needs. When Isaac has a nurse, I can sleep at night. I know that somebody who is qualified is monitoring Isaac and keeping him safe.  Because of this I can be prepared to work the next day, and provide stability and much-needed health insurance for my children.  

The U.S. Capitol Dome illuminated at night—in the foreground are a bank of pale blue lights spelling out “Care Can’t Wait.

The Better Care Better Jobs Act (BCBJA), part of the President Biden’s Build Back Better agenda, is currently waiting for a vote in Congress. This bill would raise wages for the direct care workforce, create more jobs, and eliminate state waiting lists for HCBS programs. Over 800,000 Americans are on waiting lists nationwide, and this legislation would create 500,000 new health care jobs, which would, in turn, allow 1.1 million family caregivers to return to work. A September 2021 analysis by Moody’s Analytics shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs. 

Why can’t Congress act to pass this vital legislation? Why can’t Congress provide full HCBS funding of $250 billion we need to make sure that my son, my family, and millions of other Americans have the care we need?

My son needs nursing care so that I can work and support my family. My son’s nurse needs better pay so she can support her own family. But some members of Congress are fighting funding for the Better Care Better Jobs Act and the Build Back Better Act because, they say, the cost is too high. For who? I’m part of the economy, too. 

I need your help, because we will all need care at some point. Call your representatives NOW. Demand that they stand up and fight for our families. Tell them our care infrastructure is in crisis. Pass the Build Back Better Act, because Care Can’t Wait.

---

Kim Crawley is a single mom to two amazing boys, Isaac (12) and Elijah (9). She has been a full-time special education teacher for 20 years, born and raised in Northern Virginia, and she loves raising my boys there. Kim became an accidental activist when her son Isaac lost his health insurance after hitting a lifetime maximum at the age of 15 months. Her family has been proud members of Little Lobbyists since shortly after its inception.

Art by Rob Stone, yarn on ceramic tile. [image description: Pieces of yarn (dark & light blue, light & dark green, red, orange, and yellow) have been dropped in tangled loops on a glossy white ceramic tile and glued into place.]

I’ve been thinking about trauma lately. Our children and our families have been through so much over the last year and a half--not only the pandemic itself, but the insurrection at the U.S. Capitol; the natural disasters caused by climate change; the U.S. withdrawal from Afghanistan; the refusal of some Republican leaders to support mask mandates, vaccinations, and public safety; and the mounting Covid death toll, which has now surpassed the total U.S. deaths from the 1918 flu pandemic.

After over two decades of coping with the medical and social trauma both Rob and my family have experienced, I thought I knew how to manage. A therapist once advised me never to think more than six months ahead while going through a crisis stage. That window is manageable--I can make reasonable plans, but avoid catastrophizing about unknowns. 

All of us have our tricks and tips to get through the day, the week, the month, the year: Meditation, a glass of wine now and then, time with friends and family, a funny movie, and so on.

That is, I imagine many of us living with complex medical needs and disabilities are used to the reality that our lives are often subject to crisis and uncertainty. But, lately, our inner and outer worlds have been more than disrupted, they’ve been beaten up beyond recognition. 

And, now, another pandemic winter is upon us, with only the glimmer of a pediatric vaccine coming at some point in the next few months. 

In any discussion of trauma, you hear a lot about the body’s “fight or flight” response. Under our current conditions, we can neither “fight” an invisible virus (as well as all the other problems our society faces), nor flee. We may often be frozen with fear, uncertainty, indecision. 

This is typical. What no one told me until I began studying trauma is that “fight or flight” is only two-thirds of the range of biological and psychological response to trauma. The third is “freezing,” which some clinicians call “surrender.” If you cannot fight back or flee a dangerous situation, your primordial brain is primed to freeze. This often allows a person to survive a crisis period. In the animal world, freezing may deter a predator or distract it long enough that the organism under attack finds a means of escape.

Most of what’s going on in the world right now appears beyond our control; thus, we freeze. Recovering from a single incidence of trauma is difficult; recovering from a series of traumatic events is even harder, especially when the trauma is ongoing.

But there are things we can do. Trauma experts consistently identify a starting point for moving forward: establishing and maintaining a sense of safety. Your sense of safety may come from a place, a person, or a sensation. Identify that. Build upon it. Retreat to it whenever necessary. Help your children identify their own safe spaces.

From a place of safety, you can begin to establish some sense of control. Identify what you can and cannot control, big or small, consequential or seemingly insignificant. It may make you feel better. Keep adding to and building upon the big and little things you can control--decisions you can make, actions you can take, independence you can achieve.

That’s how to begin finding equilibrium (or trying to) in our upended world. 

And finally, figure out what human connections matter most to you. Devote your energy to them. And don’t forget advocacy! “There’s strength in numbers” aren’t empty words. Judith Lewis Herman, a leading trauma researcher, says, “[People] who recover most successfully [from trauma] are those who discover some meaning in their experience that transcends the limits of personal tragedy. Most commonly, [people] find this meaning by joining with others in social action.” 

Now breathe. 

Further Reading:

• Judith Lewis Herman, Trauma and Recovery: The Aftermath of Violence--From Domestic Abuse to Political Terror.

• Peter A. Levine, Waking the Tiger: Healing Trauma. 

• Bessel Van der Kolk, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer.

Stock photo. [image description: A young boy (left) with pale skin wears a blue surgical face mask and yellow shirt and carries a royal blue backpack. He elbow-bumps a young girl (right) wearing an identical face mask who has pale skin and braided hair. She wears a blue-striped shirt and carries a pink backpack. The two stand in front of a school building.]

Joyful, silly, and smart are words my husband and I would use to describe our six-year-old son. He is a child who knows no stranger, genuinely loves everyone he comes across, and is obsessed with cars. The world is his oyster, and he loves being an active participant in life! He loves to play, explore, and tell knock-knock jokes--his favorite being one about an interrupting chicken. 

If you were to meet our son, you would think he's a typical child, but on the inside his windpipe and bronchial tubes are partially collapsed all the time. They collapse 100% when he coughs. Our son has a "hidden" disability called Tracheobronchomalacia. It is a rare and incurable airway disorder that can potentially be relieved, but not cured, by a series of highly specialized and complicated surgeries. 

As I sit in a dark, cold, and cramped hospital room writing this while also watching machines read out a myriad of information during my son's third sleep study in his six years of life, I wonder what it must be like to have a “typical” child. It must be freeing to not sit and stare at a pulse/oximeter all night when your child has a "little cold" or watch to make sure your child's chest rises and falls, not because that's "what all parents do" but because there's a very real possibility that your child has completely stopped breathing in the middle of the night. 

My son doesn't just get a two-day cold, he gets a two-week cold because of his airway disorder. This means that every little cold he gets is trapped deep down in his lungs and turns to pneumonia. Now imagine having a child with this condition during this global pandemic and you can maybe emphasize with a fraction of the terror we feel daily in making basic decisions like, should my son go play outside with friends? 

Other than chronic lung disease, during COVID there have been no limitations on my son’s ability to participate in school or extracurricular activities, except one: he must be around others that mask to protect his airway. This means when a school has a universal masking policy for the classroom, but fails to require masking during gym, music, recess, after school activities, and has little-to-no mitigation strategies during lunch, a child like ours has to sit alone in an alternate space to eat. He has to sit alone in his classroom during gym and music and watch a simulcast of his classmates having fun. To add insult to injury, his parents are told after school activities hosted by the PTO are "not a good fit" because masking is no longer required. Each of those things is a daily reality for our kindergartener. But why? 

Last year our school district, Indian Hill Exempted Village, did a remarkable job of keeping children, faculty, and staff safe all year. It never shut down once because of its strong masking policy and mitigation strategies. But now, despite a more highly contagious variant of Covid circulating, our district is suddenly dropping all those tried and true mitigation measures. Why? 

Does my child’s school truly value GOP political pressure over the lives of their students, faculty, and staff? That's certainly how it feels from our perspective. 

And then there is the option of virtual schooling. If you were told your child could either learn in-person (studies have shown that it is a healthier environment for success), or stay at home with no social interaction, learning only math and reading, what would you choose? Forcing a child to have an inequitable education because of a medical condition or disability is both unacceptable and illegal.

The one thing that can protect our son, and so many other children like him, is the small “ask” of wearing a mask at all times indoors. That's it. If all his classmates wear a mask in gym and music, our son can finally participate fully in school without risking his life. If all his classmates wear a mask in the classroom, he can receive the equitable education he is entitled to. 

That's it, just a mask. Just a mask until he and all children under 12 are able to receive a vaccination. A piece of cloth to save a life. How could that even be a second thought for anyone? 

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The author of this important message on children's public health requested anonymity because of recent death threats individuals advocating for school masks in their area have received.

Elvina’s daughter Colby. [image description: A young woman with light-colored skin smiles at the camera; she is seated in a family kitchen. Her brown hair is pulled back from her face. She has braces on her teeth, and wears a gray hoodie.]

My daughter Colby has turquoise braces and a dimple in one cheek. Her blue eyes are turning green, just like mine did as a teenager. She wears her luxuriant brown hair pulled back to frame her differently shaped ears. The photographer Mary Ellen Mark called her ears, “her signature.” She loves the word “shoes.” She loves Lana Del Ray, Clairo, and Cat Power. Her body is rocked often and deeply by intractable epilepsy. 

During her first EEG as an infant she was regarded as a miracle. That she could not only survive the massive and frequent seizures, but could smile and breath and breast feed and pincer grasp at blueberries--she should not have been able to do any of this, given the severity of her seizures. Over the following 16 years, she has had brain surgery and multiple orthopedic surgeries.

Colby has apraxia and is nonspeaking. She has a series of sounds and gestures that people close to her can understand in context. She reaches toward the shelf with crackers when she is hungry. She holds your hand when she wants you to stay near. She pushes away the shirt she wants to wear when you give her a choice between two. 

Colby receives Medicaid Home and Community-Based Services (HCBS) through New York State, where we live. She qualifies for nearly 24/7 care. We have never been able to staff those hours. It’s the same story as everywhere else: low wages and complex work leads to a nearly non-existent labor pool. Add to that the high cost of living in a college town, such as Ithaca, and people cannot afford to live on current wages prescribed by state policies. 

 Colby is 16 years old now.  She has never slept through the night. She needs emergency meds administered. She needs care and attention before, during and after seizures. Colby needs full assistance to eat, attend to personal hygiene, and get around. Her independence will always require significant support from other people. 

Colby and Elvina. [image description: A black and white photo of a mother and daughter. The daughter, to the left, looks away from the camera, smiling. The mother looks directly at the camera.]

The first few years of Colby’s life I stayed home and my husband worked. His work required traveling for long periods of time. Then I took a turn returning to work, which was great for a while. Eventually though, the care of a medically complex child became impossible for me to balance with full-time work outside the home. We could find no other qualified caregivers to work for what New York State’s Medicaid HCBS paid, nor could we, as parents, be compensated for her care. In the hours I work that someone else could be employed to perform, I feel that I am not a parent. I am a caregiver, and caregiving is not the same as parenting. Colby is not work, but her care is work. 

It was a rapid descent from leaving full-time work to the food stamp application. Being unpaid caregivers meant our family qualified for $400 or so per month in SNAP benefits, and $600 or so per month in SSI based on Colby’s permanent disability. For a family of four. With a Grammy Music Award and a Smith College education between the parent heads of household, this was a shocking turn. 

But instead of deciding this was impossible, which it is, I dug my heels in.  We did what we had to do, like put dental care and car repairs on credit cards. Truly, what were our choices? Put our daughter in a permanent institutional placement? So I can work and afford life? Where are Colby’s person-centered choices in that equation?

My daughter deserves the dignity of excellent care that humankind, and a wealthy nation, are capable of providing. Our country needs to treat caregiving labor as infrastructure. And caregiving labor needs to be paid no matter who is doing the work. Colby’s care should not equal poverty for us, or for a direct support worker trying to subsist on current substandard wages. Raising wages for all care work would be a net positive to our economy. It would raise the GDP, lower poverty, and raise savings. The dignity of a liveable wage is within our capacity as a country and economy.  

A Message from Little Lobbyists:

Caregiving is infrastructure. Our kids, and all people with disabilities, have a RIGHT to access the services and support they need to survive and thrive in their own homes and communities. But in order to make that civil right a reality, we need funding to support better jobs for caregivers and improve the quality and quantity of care for our families. That's why Little Lobbyists support the Better Care Better Jobs Act! Please call your senators and tell them why YOUR family needs them to pass full funding for this historic bill in the reconciliation package!

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Elvina Scott is a mother, writer, and athlete. She has two children, one with disabilities, including intractable epilepsy. This parenting experience informs her writing and advocacy work. Elvina is an ultra distance runner. She is a graduate of Smith College. 

Little Lobbyist Simon Hatcher poses in front of the U.S. Supreme Court steps with his dog. [image description: A light-skinned disabled boy poses in his wheelchair in front of the white marble steps of the U.S. Supreme Court. The Court’s Corinthian columns and can be seen in the background. The boy holds the leash of his dog, a large curly white-haired breed whose long pink tongue is sticking out.]

The Senate and the U.S. House of Representatives have voted to allow legislators to begin drafting President Biden’s $3.5 trillion “human infrastructure” package through budget reconciliation. 

The Biden Administration has asked for $400 billion for Home and Community-Based Services (HCBS), which are part of the federal Medicaid program, to be included in the $3.5 trillion final package. To this end, Senator Casey and Representative Dingell introduced the Better Care Better Jobs Act, which designates funding to reduce or eliminate waiting lists for HCBS, increase wages for home health aides and direct support professionals, and allow hundreds of thousands of children and adults with disabilities to live where they choose — outside of institutions. 

Home and Community Based Services, known as HCBS, are skilled supports – aides, home health care, and skilled nursing services, etc. — that enable disabled people to live in their own homes and communities, contributing their talents and skills, working, volunteering, and learning. HCBS provide the human infrastructure for disabled children and adults, and their non-disabled family members, to be fully included as citizens, just as roads, bridges, airports and public transportation help people connect, get to work, travel for business and pleasure, and allow goods to be delivered across the country. 

HCBS is a critical part of  Medicaid, but it can be difficult to obtain and is not available to everyone who needs it. There are currently over 800,000 people on decades-long waiting lists for HCBS, and far more people qualify who aren’t even on waiting lists yet. What’s more – people who qualify are guaranteed care in an institutional setting, but not in their own homes – which is far less expensive and what most would prefer.

So, what’s the problem? What’s the history here?

Medicaid 101

Medicaid was established by President Lyndon Baines Johnson (LBJ) in the Social Security Act of 1965, part of his Great Society initiative, perhaps the greatest human infrastructure achievement of the 20th century. Medicaid was created to provide health insurance and services to the poor, elderly, and/or disabled. The 1965 law also entitled people who needed 24/7, or nursing-level, care to receive that care in an institutional setting without a waiting period. This is frequently referred to as Medicaid’s “institutional bias.”

Disability activists Mia Ives-Rublee (center, Director of the Disability Justice Initiative at the Center for American Progress) and Elena Hung (right, Co-Founder of Little Lobbyists), two young disability activists, and two dogs in front of the U.S. Supreme Court. [image description: Left to right are seated on the pavement a large white curly-haired dog, a light-skinned boy with glasses, a large white short-haired dog, a light-tan skinned woman with short black hair, a light tan-skinned young girl with black pony tails, and a light-tan skinned woman with black hair pulled back. In the background is the facade of the U.S. Supreme Court.]

But, as we know, nursing homes and other facilities cannot duplicate the love and support of friends and families, nor opportunities for growth, education, and community engagement. The Covid-19 pandemic has also shown us how dangerous institutional care really is, a point disability activists have been making for decades. Home care is also less expensive than facility care. 

Until 1983, Medicaid did not provide in-home care. Throughout the 1950s, ‘60s, and ‘70s, disability and parent activists fought for the rights of disabled people to live in their communities. The independent living movement was founded by Ed Roberts, and Judy Heumann fought for the implementation of Section 504’s antidiscrimination provisions. The Arc of the United States was founded by parents to help keep children with intellectual and developmental disabilities at home. 

A tipping point came in 1981, when the story of Katie Beckett came to the attention of President Ronald Reagan. Katie was a 3 year old girl who had developed disabilities after a brain infection. She was forced to live in a hospital for three years because she needed a ventilator and Medicaid would not pay for her care to be provided at home. 

President Reagan was moved to act, and with the support of the president, the disability rights movement was able to make progress toward providing home care for medically complex persons with disabilities. In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. For dependent children with disabilities, family income could also be waived. Congress considered these “waivers” to be demonstrations, meaning states could develop their own programs to do what worked for them.

The result is our contemporary suite of Home and Community-Based Services programs, part of Medicaid’s state-federal partnership. All states now have some form of a “Katie Beckett waiver,” which allows medically complex infants and children to be cared for in their homes. Many states also have Autism waivers, some have a waivers specific to people with rare and expensive medical conditions, and others have general developmental disability waivers. Each state is allowed to limit how many people can receive services and to establish waiting lists for services. 

Because of this variability from state-to-state, Medicaid waivers for HCBS have a patchwork quality. Who’s eligible for services depends on where you live, and if you move between states, you lose your services and have to reapply. 

The result is that American citizens with disabilities have the right to funds for health care in an institution, but NOT to receive funding for health care in their own home.

Home and Community Based Services are a Civil Right

With the passage of the Americans with Disabilities Act (ADA) in 1990, and the 1999 U.S. Supreme Court Olmstead Decision, the disability community achieved clarity: living in the community of your choice is a civil right. 

Yet decades later, this civil right is still not attainable for hundreds of thousands of people with disabilities, and disability rights advocates continue to fight to expand and improve access to HCBS. States balk at the “cost” of transitioning disabled people out of institutions and into their communities as they continue to operate under the false assumption that institutional care is “cost-effective.” States can still shirk the Olmstead Decision by claiming they don’t have enough money to let everyone who wants to live in the community of their choice. 

Caregiving IS Infrastructure

Nine young Little Lobbyists pose on a tree-lined Washington D.C. street with the U.S. Capitol building in the background. [image description: Nine young children with various skin tones pose on a city street with varying shades of pavement (grey, dark red, tan). Some of the children are in adaptive strollers with medical equipment, others stand. They are all goofing off, adorably.]

This is why the disability community, our families, friends and non-disabled allies need Congress to pass the Better Care Better Jobs Act to provide full funding for HCBS. We need to eliminate waiting lists, establish new state programs, and fulfill the integration mandate of the ADA. 

We need states to understand how critical it is to support families in their own homes and communities. The Better Care Better Jobs Act will create 516,000 new good paying care jobs to bolster the caregiving workforce, which is currently in crisis due to our country’s rapidly aging population and the ravages of the pandemic. It will also allow more than 1.1 million unpaid family caregivers to return to the workforce, dramatically reducing the financial impact of caregiving on families.

Most of all, we need to demonstrate that it is entirely possible for LL of us to survive and thrive outside the walls of institutions; contributing our skills, talents, and tax dollars to America.

We are the face of human infrastructure, and we are deserving.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. Laura LeBrun Hatcher is the Design and Communications Director of Little Lobbyists, a creative consultant and design educator.

Rob and his disability rights button collection. [image description: A business card on a brown wood table shows a man with light skin sitting in a wheelchair on a grassy hill overlooking the city of Washington DC. He wears sunglasses and a Washington Nationals baseball hat. Four round advocacy pins are placed near the business card: “Meaningful Work Community Inclusion Transcen.org; Little Lobbyists (with their star child & heart logo), “Disability Rights are Civil Rights”; “Health Care Voter.”]

I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill on his behalf to check out Little Lobbyists’ advocacy efforts. Rob was transitioning to adult services, and he’d decided he wanted to be a disability and health care advocate (as well as a poet and an artist). Would Little Lobbyists be a good fit for him? 

After visiting Hill offices, I went to a reception for the Disability Integration Act, which had just been introduced in Congress. Walking into the wood-paneled conference room beneath the Capitol, I saw a room full of passionate and excited disabled people, and I thought, “Wow! Here are our people.” 

And that’s my first point: Disability is shared community, history, and culture. Rob experiences the thrill of belonging every time he meets another wheelchair user, a person who communicates by augmentative technology, a person who identifies as Autistic, Deaf, Neurodiverse, and/or chronically ill. Rob is nonspeaking, and I see his joy in his body language: his face lights up, his shoulders straighten, and he sometimes kicks his legs with glee. 

Under the Individuals with Disabilities Education Act (IDEA), Rob had access to the public school system and benefited from an inclusive education; however, as he reached high school, he was less and less included in the regular classroom because alternative “special” education classrooms could still be used by administrators to fulfill the IDEA’s “least restrictive environment” clause. 

This narrowing of possibility in public education as disabled youth reach adulthood speaks volumes about how our society expects “special needs” persons to participate in the real world--society has no expectations that they will live inclusive and self-directed lives. Disability rights is all about changing that.

My second point: When we say people have “special needs” instead of disabilities, we’re emphasizing “needs” instead of “rights.” In fact, disabled people have rights granted to them by law, including the Americans with Disabilities Act (ADA). Using “special needs” gives others the wrong impression about our children. “Special” needs don’t have to be equal, while “rights” carries that expectation. “Special” needs aren’t the same as everyone else’s needs--they’re different, segregated, and subject to being met after the needs of the majority are satisfied. 

Taking a page from Elena Hung about her own daughter Xiomara, Rob’s needs aren’t “special.” His needs are the same as everyone else’s: to breathe, to eat, to socialize, to get around, to be educated, and to choose his own path in life. His life has value and, just like everyone else, disabled or nondisabled, Rob requires varying levels of support, accommodation, and medical intervention to be an equal member of his community. 

Looking back on the 24 years of Rob’s life, I can’t remember not using the word “disabled” to describe him. That’s who he is. Being disabled isn’t “less than” or “incapable.” It isn’t shameful. It’s just another way of being in the world and living your life and expressing your truth.

Rob at a recent state park outing. [A young man with light skin sits in his wheelchair in front of a colorful wall mural with a Maryland State Map, beneath which is written “Nothing is real until it is experienced.” There are also painted images of a turtle, a crab, and a squirrel visible.]

I spent two decades advocating for and with Rob for his rights to be included in his school and in his community--asking family, friends, neighbors, as well as medical and social service workers to be inclusive and prioritize accessibility for Rob. I wanted to model those expectations for Rob so that he’d learn to have them himself. We learned that it is completely possible to have inclusive vacations, activities, and social gatherings. Sometimes we had to do things differently, but we still had fun. For instance, when we visit my family in Vermont, we spend time at museums and accessible tourist attractions, rather than hiking or skiing. 

If you’re still using the term “special needs” to describe your child, let me ask you: Are you holding onto fears and stigma society instills in many of us about people with disabilities? Are you worried that if your child identifies as disabled, they will be excluded? If so, look at Rob. He’s living his best life--he’s loved, supported, and included. And he’s disabled and proud of it. 

Rob uses an augmentative communication device, and one of the things he most likes to say is “I’m fighting for my rights.” People with special needs are those we shelter, protect, and frequently exclude when their needs are deemed too “special” to meet. Disabled people have civil rights protected by the ADA and multiple U.S. Supreme Court cases, including the 1999 Olmstead Decision. Disabled children need to grow up to be disabled adults and advocate for themselves. Be like Rob. Tell your family and friends you’re the parent of a proud, disabled child.

(And, yes! Little Lobbyists has been a great fit for Rob, and could be, too, for you and your family!)

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Jeneva Burroughs Stone is the Blog Manager for Little Lobbyists. She is also a writer.

Payton (center) with her dad, Randal (left), and her mom, Kristen (right). [image description: A dark-skinned man in a navy blue shirt holds his daughter, who had tan skin and is wearing a pink dress and a pink and white hair bow. The girl’s mother, a white-skinned woman is to the right with long straight brown hair and glasses.]

As our last school year ended here in Florida, I was feeling optimistic about the summer and hopeful that with the widespread availability of Covid-19 vaccines we were at the end of this pandemic. My daughter Payton is seven years old and has just finished kindergarten. She loves dancing, being tickled, listening to music, watching movies on her iPad, and playing with friends. Payton has attended public school since she was three years old, despite having a tracheostomy and feeding tube. She thrives in public school around her peers; it is where she learns the best. 

Our summer went well. We took several vacations and were feeling good about the state of Covid. Then the case numbers started to rise. I anxiously awaited our school district’s plan for the fall semester. I assumed that, based on our district's response last year, masks would be a part of its plan along with other precautions. Then I heard Governor Ron Desantis' statement about school re-opening and read his executive order, which states that schools can lose funding if they enact mask mandates. I was in shock! I couldn’t believe what I read in the executive order; it sounded like a rambling Facebook post, not something from the governor of one of the most populous states in the country. 

I emailed my Florida State Representatives, the Florida Department of Education, and Governor DeSantis with my concerns, but I was worried my complaint would fall on deaf ears. So I went to our school board meeting to share my daughter's story to explain why we need masks. When we wear masks we protect those who cannot wear masks. I pointed out that the devastation from Covid-19 is not limited to death, but has also left many with permanent disability. I requested a minimum nine-week mask mandate. 

Scientists and physicians from our community also came to speak at the school board meeting. They attested, overwhelmingly, to the efficacy of and need for masks when school starts. They shared that the Florida medical system is currently overburdened with Covid patients. Our two primary hospitals have stopped all elective procedures. 

Our school district ultimately decided to do a two-week mask mandate and see what orders came from the state. There seemed to be no question that the district wanted a mask mandate, they were just in fear of losing much-needed funding if they did the right thing. But I knew that this fight was not over. 

I had been very vocal on social media and with our local news outlets after the school board meeting. As a result, I was sent the names of two attorneys who were planning to file lawsuits: one strictly on the grounds of the Individuals with Disabilities Education Act (IDEA) violations, and the other for all children, regardless of disability. The attorneys bringing the suits are alleging that under the IDEA, the governor’s refusal to let school districts implement mask policies is a violation of disabled students’ rights to a safe school environment. 

Payton (right) with her dad (left). [image description: A dark-skinned man wearing a knit cap and brown plaid shirt holds his young daughter, who has tan skin and is wearing an aqua jacket. She is looking at bright stained-glass windows.]

I reached out to both lawyers and my family was named as a plaintiff in each lawsuit against our governor, the State of Florida, the Florida Department of Education, and individual school districts.  

Our family has been told to do virtual school in Facebook comments, and one of our school board members suggested home/hospital instruction. However, people who say these things clearly do not understand the unique needs of children with disabilities. Payton does not learn well virtually. She receives a specialized education by professionals specifically trained to teach children with intellectual disabilities, and she also receives numerous therapies at school. Payton received hospital/homebound instruction once after scoliosis surgery; we learned then that this type of instruction is not adequate to meet her needs.

Payton deserves to receive an education in the least restrictive environment, in accordance with the IDEA. For Payton, that is her in-person school classroom. We are not going to remove her from in-person education simply because some people selfishly refuse to wear a mask and follow basic safety precautions. We are going to fight for her right to attend school in a safe environment.  

When I think about our Governor DeSantis, Florida public officials, and many of my fellow citizens who are advocating so strongly against masks and other precautions, I am almost envious of them, because clearly they have never had to worry over a sick child. If they had, they would want every layer of prevention to protect their child. 

During this pandemic, we could have been teaching our children to love and care for others--that we can do small things to protect others--but we aren’t. If we made an effort to do that, it would easily be the greatest example of selflessness we could teach them, an example in which our actions speak louder than our words. 

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Kristen Thompson is the parent of Payton (7) and Bailey (3). She lives in Gainesville, Florida. Kristen has been an advocate for children with disabilities since her daughter Payton was born with Trisomy 18. Kristen has completed the Partners in Policymaking program through the Florida Developmental Disabilities Council. She serves on several advocacy boards and volunteers with several organizations. 

Cailyn out in her community, assisted by a direct support aide. [image description: A young disabled teen wearing pink sunglasses and a bright pink outfit sits on an adapted red bike. An aide assists her moving through a sensory “tunnel” (an open pipework on which various objects are suspended).]

The Better Jobs Better Care Act would provide desperately needed funding for Home and Community-Based Services (HCBS) for thousands of disabled children and adults nationwide. Through Medicaid waivers, HCBS provides skilled nursing services, direct support professionals, and equipment and supplies not covered by private insurers to people with disabilities so that they might live where they choose and remain in their homes and communities, rather than be sent to institutions. 

HCBS is an essential part of disability rights. However, some in Congress don’t understand these rights. Uninformed decisions by lawmakers threaten the lives of disabled people and those who care for them. Jen Reese, mom to Little Lobbyists Cailyn, shares her story. 

Tell us about your family.

My husband and I have two daughters, ages 9 and 13, and we live in Virginia. My husband is a software developer, and I work in a role supporting families like mine--with kids with disabilities. 

Explain your daughter Cailyn’s complex medical needs and disabilities.

My daughter Cailyn is 13 and a happy, smiley girl. At five days old we noticed her having seizures, and at a week old she spent her first week in the hospital. She was diagnosed at 4 years old with a rare genetic anomaly that affects proteins in her brain. Years of uncontrollable seizures have left her with intellectual and developmental disabilities. Due to these, she needs total care, including her liquids and medication via feeding tube. Cailyn does not communicate verbally and uses a wheelchair for mobility.  

When did Cailyn first get access to HCBS? How many years did you wait?

When Cailyn was about 16 months old, an early intervention therapist convinced us to apply for a Medicaid Waiver. She qualifies due to her disabilities and need for nursing home level of care. There was no waitlist for the entry-level Medicaid Waiver in Virginia, and it was life changing. We were able to have caregivers come into the house because a regular daycare could never take care of her. Plus she’d be super-susceptible to any germs from the other kids. We have good private health insurance that covers a lot, but sometimes medical equipment or services aren’t fully covered. Our out-of-pocket costs were tremendous before the waiver. Medicaid is Cailyn’s secondary health insurance and helps her stay in our home instead of an institution. 

If we didn’t have Medicaid, I would not have been able to keep working, we would not still own our home, and having another child would not have been possible, given the financial limitations. Cailyn waited almost 10 years for Virginia’s Developmental Disability Medicaid Waiver, a second Medicaid Waiver in Virginia that includes supports for employment and group homes. There are still approximately 12,000 people on that waitlist in Virginia, and they are given the waiver based on priority. Sadly, some adults have to be facing homelessness before they are awarded a Medicaid waiver. 

How do HCBS help your child and your family survive and thrive?

Without Home and Community-Based Services, our daughter would not be home with us. She would live in an institution. 

Our extended family has a history with institutions, and I saw it break my Grandmother’s heart. Her youngest son, my uncle John-John, had cerebral palsy and severe seizures. I remember him and have pictures of me as a little kid on the day we had to take him to an institution.

I can’t imagine my Grandmother’s guilt and fear. Guilt that she couldn’t care for her son anymore and fear of what would happen when strangers were responsible for his well being. Over the years, I remember stories of him getting severe burns because no one checked the temperature of the bath water before putting him in, and of someone dropping him and breaking his arm. But at that point, my Grandfather had passed away and my Grandmother had a bad back injury from having taken care of my uncle for as long as she could at home. 

The system has changed, and Home and Community Based Services will help my husband and I keep Cailyn home. We’re able to have nurses come into the house and help care for her, and we’re able to focus on activities with her little sister, keep up with household chores, or just take a break. 

Some members of Congress don’t think HCBS are real infrastructure. How do you respond to that? 

Infrastructure is defined as the basic physical and organizational structures and facilities needed for the operation of a society or enterprise. 

Seriously, you’re living in a bubble if you think Home and Community-Based Services aren’t infrastructure. Societies are required to take care of their disabled people, and we haven’t been doing a good enough job. If I didn’t have help for my child, I’d be out of the workforce. Caring for Cailyn also provides jobs for others. Infrastructure is not just bridges and roads. 

There are HUGE waitlists for HCBS, there aren’t enough providers for services, and the reimbursement rates are so low it’s despicable. A babysitter in my area for a child without disabilities costs about $20 an hour. Medicaid pay rates for caregivers for people with disabilities in my area has just hit $13.60 an hour--even Target starts its workers at a higher rate of pay than that. 

What would happen to your child and to your family if the HCBS you receive were reduced or even taken away?

Threats to Medicaid under the Trump Administration pushed my anxiety levels through the roof. If HCBS were taken away, my family would be broken. How would we come up with $6,000 extra dollars a month to pay for the feeding tube supplies and special formula Cailyn needs, plus diapers, plus medications, plus wheelchairs, plus a hospital-style bed, plus a modified van for transportation etc., plus, plus, plus …

How would we be able to keep her home? We’d be financially devastated. Bankruptcy would have to be a consideration, including selling our house, cars, and raiding our retirement fund--it’s a nightmare I’ve had many times. It is all overwhelming and makes me want to vomit at the thought of it. 

Do you know of families in Virginia who are still waiting for HCBS? What would you urge them to do?

I know many families who are still waiting--12,000 in Virginia alone. Waiting for our government to do the right thing and provide funds for disabled people to have a life like everyone else. Everyone should be able to live where and with whom they want. If they need supports, we have to make sure they are in place--healthcare, transportation, housing, and job supports. Please do the right thing. President Biden’s funding recommendations are a wonderful start and it’s really just the right thing to do!

Describe the power of HCBS in a single sentence. 

HCBS help keep my daughter happy, healthy, and safe. 

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Jen Reese is a member of Little Lobbyists from Virginia.

Dear Senator Warner,

There is a particular feeling, a whole set of sensations, ranging from shakes, sweats, feeling of rawness inside my body, aching bones, swollen lymph nodes under my chin and arms, nausea and weak/painful muscles that I get when my body is dumping thousands of white blood cells all at once from my lymph system into my bloodstream. It is awful and exhausting. This morning, even after a night's sleep, my legs and neck and arms ache badly and I feel a physical weakness that is hard to describe.

I say this here, in public, because today I have to care for my adult son who is disabled, and lifting him will be dangerous for us both, painful and exhausting for me. I will cook for my son, feed him, and assist with every single thing most people do without a thought. Today I will also support my daughter, who has a disability, too. I have done this in one way or another for nearly 30 years, and since the pandemic began, returned to supporting full time, every single day, one or both disabled family members. Since April, I have done this while also being treated for cancer, and I have continued to work throughout.

This was initially going to be an apology for not continuing later into the night last night, reaching out to people who might contact Senator Mark Warner about his intention to leave caregiving out of the infrastructure bill. But, no. I will not apologize.

Jill Jacobs with Senator Warner

Senator Warner, you may not remember me, but we worked together a whole lot when you were Governor of Virginia on Medicaid Home and Community Based Services (HCBS). Here is a photo of us together in your office one day when I came with my friend Keith to talk about HCBS. That day we talked about the value of caregiving, of caregivers, to disabled folks and their families, to communities, to society, to the economy. My family and I ask that you recognize again now that Caregiving is Infrastructure.

Since Covid began we have faced an ever-increasing caregiver crisis in this country. For my family, we are now finally 60% staffed. 60%. With my years and years of experience navigating the system, we are finally 60% staffed. Why? Because there are no caregivers anymore. Why should there be? We Americans disrespect caregivers. We called them 'heroes' during Covid, yet demonstrate by our actions, how we really feel. We view caregivers as worthless. We do not pay them fairly nor properly, offer zero health insurance benefits, no leave, no training, no career advancement. The pandemic's added risk of death finally broke the system. We need to fix this now.

The caregiving crisis is real and will only get more real as we face the daily care needs of an aging population and added numbers of Covid survivors.

I realize there is huge pressure now to make this Infrastructure bill pass and I appreciate and honor your work in a bipartisan way to get to that point. However, doing it on the backs of disabled people and their families, by not supporting caregivers, is taking a serious risk with human lives, the very people who have suffered and lost so much during Covid. And it harms the whole community, our country, our economy because this is a huge area of need right now, of potential employment, of people working and paying taxes, buying products, spending money, in every city and town in this country. Caregiving allows family members and many disabled folks to work, too, which diversifies our investment and increases our tax payments and spending. The caregiving spending in this bill is an economic investment in people, in cities and towns and states in a real, solid, human way.

Senator Mark Warner, find another way to reduce the amount of this Infrastructure bill. Keep caregiving in the bill and let's see HCBS flourish, create jobs, create community activities and living and spending.

Let's talk Senator.

Your constituent,

Jill Jacobs

P.S. For anyone reading this, I ask you to reach to Senator Warner, too, as well as anyone who represents you, and let this be known.

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Jill Jacobs has been working for disability justice for 28 years. She’s the Executive Director of the ENDependence Center of Northern Virginia (ECNV), one of the oldest Centers for Independent Living in the Country. Jill is a Social Worker with 22 years of experience in health and human service policy, programming, analysis and service delivery systems. She is a graduate of University of Texas and was trained by US Army Social Work Services at Fort Hood, Texas. Jill is also an activist, artist, mother of four, grandmother of three, and a resident of the Commonwealth of Virginia.

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]

“We shouldn’t live on this street anymore” I muttered to my son while pushing his wheelchair uphill toward an outdoor school gathering. I could feel my heart rate climb as we neared the top of the hill and sweat pooled inside my mask. My mind was occupied with many thoughts: the changes in state policy disallowing inter-state telehealth visits, the multiple medical facilities saying they would not provide care due to policy or insurance or prohibitive cost, his upcoming transition to middle school, and the choreography I was to teach his friends at the park where we were heading. 

Through his assistive communication device, my son had told me he wanted to do a dance performance for his upcoming graduation ceremony. This would involve all of his classmates dancing to the song Best Summer Ever, from the radically inclusive movie of the same name. We arrived at the park, my heart still pounding. I ignored it. I talked with his teachers. I took pictures of him reuniting with friends after fifteen months of strict quarantine. I fed him lunch. I taught his class the dance moves he had approved using hand signals. I didn’t say anything to anyone about my heart rate. I just kept going. 

Stopping what I was doing and asking for help did not even occur to me. As a family caregiver, I am my son’s transportation and food delivery system, his advocate and his interpreter. I am lauded for my perceived sacrifice and determination. I am hailed for heroism, tenacity and grit. Throughout the pandemic, my husband and I have been supplying these essential Home and Community-Based Services (HCBS) for our son on our own.

It was only when one of his friends asked if he could push my son in his wheelchair that I realized how bad I was feeling. 

“No honey, I’m using the wheelchair to balance myself.” 

I am accustomed to ignoring my own health needs as part of the heroic trope often projected onto--and internalized by--family caregivers. I push on. I power through. 

But all unattended infrastructure, like buildings and bridges, can collapse, and I suddenly felt like I might do just that. Returning to our apartment I told my husband my heart was racing and he connected me to our son’s pulse oximeter machine. One eighty. My heart had been racing at this speed for over an hour. But now I felt scared. My father and grandfather both died young of  heart attacks. My hands and feet and face went numb. I laid down so I wouldn’t fall. My husband called 911. EMS hooked me up to EKG, diagnosed my supraventricular tachycardia and gave me IV medication to stop and reset my heart before taking me to the ER.  I was discharged nine hours later with a referral for cardiology follow-up. 

I was shaken. How did I let this go on for so long? What would have happened to my son if I had blacked out on the hill? 

At my follow-up appointment the cardiologist explained this event saying, “Most people come to a stop sign, slow down and stop. Your heart instead drove in really fast circles around it.” I laughed at the aptness of this metaphor for my life and cried when he diagnosed me with caregiver fatigue. 

Yes. I am exhausted. I am bone-tired from battling insurance denials and inaccessible architecture and ableist attitudes (while continually unlearning my own), and constantly being told “No” when trying to meet my son's medical and educational needs. I am depleted after over a year without paid HCBS caregivers we could not safely have in our apartment until my son was vaccinated. I am worn down by the byzantine administrative hurdles and limited funds available to pay for caregiver services now that  we can reinstate them. I am tired of running in circles around stop signs.

The Biden Administration’s plan to invest in human infrastructure--in Medicaid and HCBS--a bill called The Better Care Better Jobs Act: A Historic Investment in the Care Economy, is, in fact, historic. Our country’s failure to invest in caregiving as infrastructure has caused significant loss and unnecessary suffering to disabled people and their families. 

I am no longer willing, or apparently able, to allow the heroism trope to govern my behavior. I refuse to deny my own limitations or allow them to impede my son’s health and wellbeing. I don’t want to hear well-meaning people say,, “I don’t know how you do it,” or “God doesn’t give you anything you can’t handle,” or “He is so lucky to have you.” I want us to collectively dismantle the unjust structures that limit access to disability services and support. 

Twenty percent of Americans have at least one disability. The pandemic has shown that any one of us could suddenly and unexpectedly become disabled or a long-term caregiver, or both. It’s time we organize ourselves for this reality. We must invest, now, in Home and Community-Based Services. 

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Sandra Joy Stein is a writer and educator. 

Angela Carpenter Gildner [image description: a white-appearing woman with blond hair poses in a gray “Health Care Voter” t-shirt with a red cushion in the background]

On Thursday, June 17, 2021, the U.S. Supreme Court upheld the Affordable Care Act (ACA), and I breathed a huge sigh of relief. I've lost count of how many times I have metaphorically held my breath while waiting to find out if the ACA, which ensures my children and I have health insurance, will remain law.  

The Supreme Court's decision to uphold the ACA means my family of four will continue to be insured. It protects three of us from being denied coverage due to pre-existing conditions. It means I can finish my Master’s in Social Work. If the Supreme Court had not upheld the ACA, I would have had to weigh the possibility of either becoming uninsured while I finished my last classes and field work, or dropping out to find a full-time job with benefits. 

Getting my social work degree is the long-delayed answer to a professional calling to a helping profession. A calling I ignored for over a decade because good health benefits, so critical for my family, kept me tied to my old job.

In 2004, a few months before our wedding, my husband, who is a musician, voiceover artist, and audio engineer, had the opportunity to fulfill a professional dream by purchasing a small recording studio. With that purchase he left the security of a full-time position at a disability advocacy organization. I agreed my job would, for the foreseeable future, provide our family's health insurance. 

Graham and Margot [image description: a white-appearing brother and sister, each wearing t-shirt and shorts pose knee-deep in a lake with mountains in the distance on a sunny day]

That family expanded from two to four when we welcomed children—a boy, Graham, in 2006 and a girl, Margot, in 2009. During the first five years of Graham’s life, our employer-provided insurance changed carriers four times. Twice to plans not accepted by our pediatrician. Long live the myth employer-provided health care plans mean your preferred doctors will be covered year after year. 

As a mother, I wrestled with the desire to have more time with my children and the need to work full-time to maintain access to health insurance. This emotional tug-of-war worsened as it became apparent my son was not neurotypical, and my daughter, at three months old, started needing nebulizer breathing treatments several times a day. 

By the time Graham finished elementary school, he had a list of pre-existing conditions. I was grateful for the protections of the ACA—he couldn’t be dropped from our plan or max out his lifetime coverage. Thankfully, as she grew Margot's asthma improved. By the time she started elementary school she needed daily treatment only following a respiratory illness. Unfortunately, my asthma worsened significantly, necessitating two different steroid inhalers twice daily to keep it in check. 

In 2015, I added cancer to our family list of pre-existing conditions. Thankfully, my breast cancer was caught early and treated with a lumpectomy and radiation. I continue to be screened every six months, alternating between a 3D mammogram and an MRI, to ensure if the cancer reoccurs it will be caught early. 

Cancer made me hyper-aware that life is too short to waste time at a job that was no longer fulfilling. Early in 2017, I took a leap of faith and left my job of 16 years. After a couple months on COBRA, our family signed up for insurance via the DC Health Exchange, which wouldn't exist without the ACA.

By January 2018, Graham had been diagnosed as Autistic, with comorbid depression and anxiety. We had spent months, now years, working with a psychologist and a psychiatrist to find the right balance of weekly therapy and medications to ensure the playful, happy Graham who loves hugs stays present, and the angry, anxiety specter is kept at bay.

 My son will tell you, if we hadn't gotten him help when we did, he might not be here today.

In the fall of 2018, I officially entered graduate school part-time pursuing a Master's Degree in Social Work. My experiences trying to find treatment for my son, and doing citizen advocacy with Little Lobbyists to protect the ACA highly influenced this choice.

Unfortunately, as Graham's mental health stabilized, Margot's deteriorated. Margot now also has a list of pre-existing conditions including anxiety, depression, and ADHD.

Getting my children the care they need is made exponentially more difficult and more expensive by the continued disparity between reimbursement rates for behavioral health care compared to physical health care. The shortage of mental health providers who see children and adolescents means finding one taking new patients is difficult and usually involves months on a waiting list before an appointment. Finding a provider who takes insurance is nearly impossible. 

Our family's annual therapy tab reminds me the ACA still desperately needs improvement. Despite this, I am grateful for the ACA every day. Grateful for the security it provides to my family. In spite of our list of pre-existing conditions, we cannot be denied health insurance.

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Angela Carpenter Gildner lives in Washington, D.C. with her husband, children, and an assortment of pets. After graduating with her MSW in May 2022, she plans to practice clinical social work with children and adolescents, and continue her advocacy for the health of our planet and the right of healthcare for all.

Ron Carlson [image description: A white-appearing man speaks at a lectern with a microphone]

Given the Biden Administration’s commitment to Home and Community-Based Services (HCBS) and ending Medicaid waitlists, our country will need more and better-trained direct care workers. These home care workers will be vital to the ability of our medically complex and disabled children to survive and thrive in their communities. Direct care workers provide assistance with the tasks of daily living, housework support, activities outside the home, medical support, and other duties.  

Ron Carlson is the Executive Director of the Maryland Regional Direct Services Collaborative. With a background in government, public policy, and public health, Mr. Carlson has a great grasp of the issues our families will face as we build support systems for our loved ones. 

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Tell me about the Maryland Regional Direct Services Collaborative and its mission.

The Collaborative has set its mission to assure the availability of a well-trained direct service workforce to meet the needs of older adults and persons with disabilities across Maryland and DC. The Collaborative got started in 2016 with a regional meeting which brought together key leaders from Maryland Governor’s cabinet, members of the Maryland General Assembly, senior representatives from educational institutions, the hospital and long term care communities, and unions, as well as direct care providers and several provider membership organizations. 

The direct services workforce shortfall is not a new one. It had lingered relatively unattended for nearly fifty years. The call to action issued at the 2016 meeting resulted in an agenda being put in place to tackle the key problems confronted in both Maryland and DC. Corrective steps were directed at enhancing worker wages and benefits, strengthening training and education opportunities, and increasing the supply of workers. That agenda continues to evolve with progress being made on each of the key issues. The Collective has also contracted with a research firm to conduct a comprehensive workforce assessment in our region. 

What are the biggest challenges to building and sustaining a direct support workforce for children and adults with complex medical needs and disabilities?

If we are to see measurable progress toward accomplishing the mission, I see three big challenges that must be tackled.   

First is the imperative to substantially change the levels of public support for the direct services workforce. This change rests primarily, but not exclusively with the Medicaid program. Direct services work is demanding, but the pay is low. An increase in pay levels and the availability of supportive training services are essential. 

Secondly, while public and non-profit stakeholders are actively lending support to enable the frontline workforce, noticeably absent is any expressed interest or involvement on the part of the larger business and corporate communities. While the pandemic has underscored an increased importance on the availability of home and community-based services for employees of business organizations, there is an apparent disinterest on the part of the corporate community to invest and strengthen the direct services workforce as a whole.  Without meaningful support from this part of the private sector, I doubt we’ll see any appreciable change. 

Thirdly, a critically important challenge is that of rebuilding and strengthening training and education programs geared to this frontline workforce. Without more clear and affordable career pathways provided by employer-sponsored internships and apprenticeships, most if not all recruitment and retention efforts will fall far short. One of the building blocks is to enhance the roles carried by the community college. These schools should serve as the centerpiece for training. That is not the case now.      

What can our members do in their states to ensure a robust direct support workforce? 

Drawing on my experience to date, I’ve learned a couple of things. First, if the workforce is to see changes that make a positive difference, it’s important that both the general public and the public policy makers understand the problem in terms they can personally and professionally understand. This means elevating attention as to how having the right workforce available positively affects children, families and the community. For the policy maker who has to decide where and how funds are to be spent, answering the “return on investment” question is core.   

Personal interest stories must be told, retold, and shared via the social networks, the news media, and meetings with legislators either virtually or in-person. The op-ed piece in the Washington Post earlier this month, “My son’s home health worker is the face of infrastructure” is one terrific example. More of these will make a difference. Experience tells us that while legislative change is driven by research and good data analysis, the more powerful change agent is the attention-getting story that touches the policy maker in a very personal way. 

A meeting of the Maryland Regional Direct Services Collaborative [image description: A large group of people sit at tables arranged in a square in a community college meeting room.]

Tell me about the Direct Care Workforce Innovation Program which recently passed the Maryland General Assembly.  What do you hope it will achieve?

A year ago, Senator Guy Guzzone, Chair of the Senate Budget and Taxation Committee, introduced “The Direct Care Workforce Innovation Program.” Due to the shortened legislative session brought on by the pandemic, Senator Guzzone needed to reintroduce the bill this year. It was easily passed by both houses and then brought to enactment with the Governor’s approval in May. 

The legislation will provide a new resource to community-based organizations in the amount of $250,000 each year for the next several years to help them build the needed workforce.  The program will be implemented by the end of this year to allow awards up to $50,000 on a matching basis for at least three years. I see this support substantially helping organizations come up with new ways and means for tackling the challenges they face in both initiating and bolstering their recruitment and retention strategies. Very importantly, and in keeping with the objective of building new approaches, the legislation calls for the coordination of these new programs with educational institutions and with the Maryland Department of Health.  

It is expected the grant announcement launching the initiative will come sometime this fall. Coincident with the announcement, the Collaborative will conduct a webinar to highlight the program and outline how it will be implemented. For more information on the webinar, check our website and sign up for our newsletter. 

What inspired you to become involved in direct services advocacy? 

I became involved as an advocate for change while serving as the Donor Representative for the Paul R. Willging Endowment at the Howard Community College in Columbia, Maryland. The Endowment provided scholarship support for students pursuing health care careers in the care of older adults. It wasn’t long before I learned about the direct care workforce problem. While this end of the workforce delivers nearly 60% of patient care in and outside long-term facilities, direct care has a shortfall of 40%. Having spent my career in public health and health care financing, I knew well the issues confronting the acute care and primary care parts of the system, but was unaware of this part of the delivery system. It was astounding to find that so little attention had been given to direct care issues.   

By setting up the Collaborative and bringing together a strong cross section of the professional, educational, and business communities, both public and private, I thought that we could and would find the ways to close the gap.

How has advocacy given meaning to your life?

Over the past many years, I have worked to highlight and bring to life a social innovation agenda for positive change. I have long been an advocate to challenge the norms, and to argue for and present ideas aimed at strengthening a community’s ability to address problems, especially those struggling to find pathways to a better quality of life. This has included setting up “the business roundtable” to grapple with the tough issues. It has meant serving on state-wide and county level advisory committees addressing issues to improve population health. It has meant conducting community wide needs assessments to identify shortfalls, and highlight areas where communities can target interventions that work. While the challenges are endless, the occasional victories are personally and professionally fulfilling.   

If you could define advocacy in a single sentence, what would it be?

Advocacy is working to bring about those changes in communities that improve the quality of life for those in need.    

[This interview has been edited for concision and length.]

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Ron Carlson has served as the Executive Director of the Maryland Regional Direct Services Collaborative for the past three years. Previously, he served as research associate with University of Maryland Baltimore County’s “The Hilltop Institute,” and was director of the Policy Analysis Center established by the Horizon Foundation. Mr. Carlson was the president and founder of the Institute for Community Health focused on both community and population health improvement. He earlier served as the director of community health with the Center for Health Policy Studies and was senior researcher for the National Academy of Public Administration. Mr. Carlson was a founding member of the Senior Executive Service and held senior health care policy positions in the United States Department of Health and Human Services for more than three decades.  

On June 17, 2021, the U.S. Supreme Court issued a decision on a group of cases from several states that challenged the constitutionality of the Affordable Care Act (ACA). The Supreme Court ruled 7-2 that the plaintiffs lacked standing to challenge the health care law. This was the third challenge to the ACA rejected by the Court, and a huge relief for many families. Peter Witzler, a member of Little Lobbyists, reflects on this momentous day.

Peter Witzler and his family. [image description: A white-appearing father, mother and two young boys pose with their black dog in a wooded area near a stream. All are smiling.]

Today felt like an immense weight had been lifted from my shoulders. Like a nagging voice in my head had finally been silenced. Like our family could continue to dream, plan, love, and laugh without making a series of impossible choices linking our family’s finances to the well-being of our son Jackson: Could we afford to do what's medically best for Jackson? What would give him the best chance at a healthy, independent life? Without bankrupting our family?

That's because today, the Supreme Court once again affirmed that the Affordable Care Act and Patient Protection and Affordability Act (the ACA) is the law of the land. An effort led by Republican Attorneys General to overturn a key provision, the ACA’s protection for pre-existing conditions, has been defeated. 

Jackson was born with a pre-existing condition. Despite excellent prenatal care, his extremely rare form of Spina Bifida went undetected. When he was born, a hush fell across the room as doctors, nurses, his mom Lisa and I saw a mass the size of a softball on his lower back. After being transferred to Children's National Medical Center, we began the first of several long stays in the neonatal intensive care unit (NICU). During his first six months of life, Jackson totalled four months in hospitals, three brain surgeries, and a whopping multi-million dollars in medical bills. Thanks to the protections of the ACA that were confirmed again today, as well as my union-negotiated health insurance, we were able to do what was best for Jackson. 

Peter and Lisa with Jackson just before his first surgery at three-and-a-half months. [image description: Two white-appearing parents hold their infant son, who wears a Superman cape.]

The ACA is something we constantly benefit from. We made investments in care, therapies, treatment, and supports for Jackson early on in his life. When he started turning blue and gasping for air, we were able to seek specialists, a diagnosis, and learn to use a feeding tube so he could continue to grow strong. He’s had two additional surgeries, and we know there are more in his future to correct his severe scoliosis. We can plan for this and more with the security of knowing he cannot be denied care for simply being born. 

These significant investments in his health early on have made him into a mischievous, independent six-year-old who loves getting into trouble with his big brother Teddy. These early investments mean he is on track for independence, lower intensity supports, and fewer healthcare costs as he grows older and stronger.

As a fourth-generation union member, my job gave my family the means of wages, job security, and benefits to achieve the American Dream. But even collective bargaining was unable to protect working families from an insurance executive who wanted another yacht. When Jackson was born, we could have been knocked right off track. Instead, we relied on the protections of the ACA to keep moving. Instead, we’re still working toward our American Dream.

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Peter Witzler lives in Gaithersburg, Maryland, with his wife Lisa, his two kids, Teddy (9) and Jackson (6), and their pandemic-adopted dog Gabby. He enjoys sharing his love of nature and food with his family, and enjoys brewing a new batch of beer with the East Rockville Brewers Guild.  

Emma, a little girl with blonde hair and blue eyes and a trach, and her mom Stacy a blonde haired blue-eyed woman, embrace while wearing blue “Caregiving is Infrastructure Little Lobbyists T-shirts.

In many ways, my family is like any other.  We want our children to grow; to love and be loved; to do well in school, and make their way in the world.  We want them to be okay after we’re gone. But for my family, none of these things are possible without support. Frankly, we wouldn’t survive without Home and Community Based Services (HCBS), specifically, in-home nursing.  

Our twins are joyful, rambunctious, and the lights of my life!  Sara Bean is a nature lover.  She is happiest when she’s splashing in the water or digging in the dirt. Emma lights up the room with her smile, she has surpassed her medical team’s expectations.  When they were born at 28 weeks via emergency c-section, their birthdays were too much to hope for.  

Emma can do great things!  She loves therapeutic horseback riding, and she’s building stamina to play with her twin sister.  One thing she has never done is take an unassisted breath. Emma lives with an artificial airway through a breathing tube as an outcome of their premature birth and prolonged respiratory assistance.  She eats through a feeding tube that was surgically placed when she was 3 months old. 

It’s hard to describe the relentless hypervigilance that comes with an artificial airway.  When it’s dislodged, Emma is immediately in crisis. I’ve seen the light go out in her eyes as we scramble to reinsert her breathing tube.  

We have family and friends who love us and celebrate the girls' milestones with us but only my husband and I are airway-trained, unpaid family caregivers who’ve forged life-saving skills through fire, and her team of in-home nurses who have chosen caregiving as their profession.  All of Emma’s nurses are trained, licenced and capable professionals. Most are women of color and immigrants who provide vital services, yet have been historically undervalued and underpaid. This means some families experience a turnstyle of rotating caregivers, losing important consistency of care.

 I had to leave my career when my girls were born, and I long to return.  For me to be able to get back to work, Emma needs robust support to survive and thrive.  That can only happen by fully addressing the inequities we clearly see exist.  When you hear people say #CaregivingIsInfrastructure, this is what we mean.  

My daughter’s survival depends on Home and Community Based Services being well-funded, implemented, and protected.  Included in the $400 Billion budget in the American Jobs Plan, we need Congress to ensure dedicated funding for the expansion and improvement of these vital services, including increased availability AND resources to ensure that caregiver jobs provide promising career paths, and liveable wages.

I have to admit, it was a tough pill for me to swallow when I came to understand that I am not enough.  Despite my utmost effort, I cannot give Emma and Sara everything they need.  The current state-level patchwork of eligibility, services and funding means that if we need to move for my husband's job or to be closer to family, we could lose access Emma needs to stay home with us - where she belongs. 

Studies confirm that Home and Community-based Services save lives and create better long-term outcomes for children and adults. Access to HCBS affords disabled people of all ages the civil rights they are entitled to - the self-determination to choose where they want to live. Because of the pandemic, we are in a rapidly expanding public health crisis,  and are only beginning to confront the exacerbated inequities and widening gaps in infrastructure our country is facing.  

We need our legislators to protect American families; to provide relief and support; to fix broken systems and do the job we elected them to do.  My daughters are just 7 years old and have long lives ahead of them. With our legislators' urgent commitment to improving infrastructure, in the future we’ll hear more stories of self-determination and fulfillment.

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Stacy Staggs is mom to Emma and Sara and Little Lobbyists Director of Community Outreach.